Tuesday, 19 January 2016

Let me start by saying I wish I didn't have to
write what I am about to say. I have been fighting my condition for nearly 8
years now and during that time I have lost many battles. Many of you know that
having a long term condition is a daily fight and struggle between your mind
and your body. You fight pain, fatigue, low mood, lack of understanding, lack
of sleep and fear of the future to name just a few. But when other battles are
thrown into that mix it can make things so much harder to cope with.

Protests and
negative statements are made about our UK government on a daily basis about a number
of issues facing society. One of the most important issues, which have been a
topic of discussion for some time, is the so called welfare reforms that are
supposed to make those on benefits be better off in work. Our conservative
government want a better society where people earn their keep, I get that. In
fact I agree that there appear to be many individuals who are living off the
state when they are more than capable of working and contributing to society. I
also understand that it is often not that simple to just ‘get a job’ and there
are many barriers people have to overcome. Circumstances are different for
everyone but when it comes to living with a long term condition, staying in
work is not simple. A condition that presents new challenges with your health
daily mean finding a job or keeping employment where your employer both
understands and supports you is incredibly difficult.

The past few
weeks I have discovered the truth of the matter behind the theory that you are better
off in work. The truth is, for me and many others, you are not better off. Not at all, in any way. And this won’t be the case until
better financial and all round support is provided to those that are being put
on shuttle buses off to the job centre.

I have
always wanted to work. I have ambitions and determination like most people my
age. I have suffered huge set-backs in my career due to an illness I did not
ask for. I didn't want to take time out of work. I was forced to by my deteriorating condition
and a period of severe ill health. At my worst, I was claiming benefits,
because I had to leave my job, my condition was out of control and I no income
at all. I lived alone where rent and bills had to be paid. I didn't want to
'scrounge' off the state but it was my only option without a partner. I don't
have rich parents or a wealthy family. I
don't have savings and at the time I had nothing but debt from my time at
university. I was supposed to be starting a career that was supposed to justify
what I had spent on my degree. By the way, I paid my own way through university
with part time jobs and student loans. I
had no help from the state or wealthy parents to pay my fees but I didn't
qualify for reduced fees either. My career was intended to make all that hard
work worth it. But it was only a year after university that disaster struck and
my life changed forever.

I vowed to
get back to that career someday, convincing myself that once treatment was
found everything would be OK and would go back to normal. It's now 8 years on
and so much has happened. I have two artificial hips, an artificial shoulder
(and soon another one to match). I ran my own business for 4 years because I
had little confidence in being employed with a condition that varies day to day
and would require a lot of time off. I became my own boss so I didn't have to
worry about the restraints of my condition and letting people down. I worked
through two huge operations to have my hips replaced and several types of aggressive
treatments. I bettered myself by slowly regaining strength, confidence and finding
treatments that worked for me. This took time but I finally came to a place
where I felt able to work again and that I could have control back of my life.

In November
2014 I started a new career. A fresh start that, despite my degree and
experience of work, sent me back to the beginning. I wanted to work for our
health service because I felt it would be giving back for some of the amazing
support I received from them over the years. I was more than happy to learn new
skills and work my way up because I worked with some fantastic people and I
felt fully supported as an employee. Then my shoulder became a problem. All of
a sudden I was struck down again and unable to work waiting for my operation to
replace my shoulder. It was a set-back but didn't deter me, I just felt
incredibly guilty for letting others down. As soon as I could, I returned to
work and even celebrated a move up the ranks last year gaining more valuable
experience.

Then it
became all too much again. I wrote previously about the fact working full time
was having a severe negative impact not only on my health but on my life in
general. The exhaustion and pain on top of a full working day was a battle I
could no longer fight. I gave it one hundred percent and was incredibly
reluctant to admit defeat but, for my wellbeing and happiness, I made the
decision to reduce my working hours. This was an incredibly stressful time and
a difficult decision, not only because of my emotional distress at the thought
of my condition beating me, but financially I had to prepare myself. I
obviously did my research, there are plenty of things out there that tell you
working even a few hours is better than nothing and you will be supported by
your government. They tell you that you will be better off in work and rewarded
for your contribution to society. As I mentioned earlier, sadly this isn't
true.

I am
fighting a new battle with my local council housing department and The Department
for Work and Pensions, amongst others, for some help and support to simply top
up my income due to the loss of income now I have reduced my working hours.
Again, this was not my choice or hope for the future. I want to work. I want to
work full time and earn my own wage and be able to live a normal life. I want
to be able to save for the future and perhaps buy a house someday, but it's
becoming increasingly apparent that this may just be a distant dream.

After months
of letters, phone calls, submitting evidence of every part of my life (the
council especially have access to my bank accounts, payslips, medical records etc.)
I was told last week that I am pretty much entitled to nothing. Even though my
income has decreased substantially, I fall a few pounds above the threshold
that is set out by government for entitlement to help with housing costs. To
put it into perspective, I now take home less than £1000 per month and my rent
alone equals 75% of that. Whilst I receive personal independence payments, this
is mostly spent on my car costs each month because the government decided I
wasn't entitled to a mobility vehicle at one point. I had to lease a car
instead to be able to continue to travel to work, I live in a small town with
very little public transport and I need my independence in the form of
transport to be able to attend the hundreds of medical appointments I have per
year alone. On top of the lease payments I have to pay insurance, repair costs,
MOT etc and this is not cheap. However, if I had been awarded my PIP mobility
element from the start, I wouldn't have these payments to make each month. Late
last year I finally won my battle against the DWP where a high court judge
decided their decision not to grant me mobility payments was unjust and wrong.
Despite winning my case, I was in a difficult financial position still because
of being tied into a lease for the car I now have after my Motability car was
taken away.

In all honesty, I was better off
completely out of work and claiming benefits. I am in a worse off financial
position now than when I couldn't work at all. The council won't help me. The
DWP won't take my complaints seriously, when all I ask is for help to recover
the costs for the car I had to lease when they forced me into a corner
following their bad judgement. Everything I have coming in goes straight back
out and our government do not care one bit about this.

They have gone back on their word
to support people who want to work and contribute to society. It is perfectly
obvious to me why people remain on benefits, why should they work when they are
better off not doing so? But what about those who want to do something with
their lives? Where is our incentive or support when our income only just falls
over your threshold so you aren't required to help?

I don't expect everything to be handed to me.
I have worked hard pretty much all my life apart from a period of severe ill
health. I started work at the age of just 13 in a local hairdressers. I don't
expect lots of money to come to me for nothing each month. I, like so many
others, just need that additional bit of support to bridge that gap between
part time work pay and full time which I can no longer do because of a genuine
health reason. It's made me consider going back to full time just so I don't
have to deal with all this and worry about money. The stress on top of my
health issues is overwhelming and not something that will help my illness at
all. I know it would be unsafe and a hindrance to my employers if I went back
to full time because I struggle even working 25 hours a week. I have to sleep
every afternoon following work just to regain some energy. I am constantly
exhausted and I fear what would happen if I continued down that path and pushed
myself to the limit.

The worst thing is... Our
government and local council do not care. They have their targets and their
thresholds and tell us everything will be OK when it isn't. It's so far from OK
when someone like me is put into this position. I have seriously hit a low
point in my mental health this week because of all this but at least I have
people around me who care very much about my wellbeing and offer me support. I
fear for those who don't have this because having financial worries on top of
health issues is just not right or fair. What is happening to society that
those who want to try and make something of their lives are doomed to succeed from
the start because of cut backs and lack of support? Where is the support from
the government when we need it most? I will continue to fight as long as I am
able, but I fear this is a battle I don’t have the strength to win.

Sunday, 20 December 2015

On my good days, it's a lot easier to stay positive and remember how fortunate I am in many ways to have a loving, supportive family and group of friends. I try to stay positive as much as I can as the alternative brings much sorrow and self pity.

I had a few of these dark days last week. A period of time where my mind spiralled out of control into a place I hate where nothing seems fair or good. The Christmas period is always hard for some people and if you have RA you can relate to trying to fit in all those parties, family gatherings and festivities around a disease that doesn't allow for planning and requires a lot of rest. People often ask me if my condition is worse in the winter, and for some perhaps the cold weather is an additional burden on the joints but for me that isn't really the case. The winter months bring dark days and longer nights and that is the worst part for me, constantly feeling tired and groggy is bad enough without it getting dark at 4 o clock. Christmas, however, should bring some light and joy into that equation of dark days and tired bodies.

This year I haven't really got into the Christmas spirit as yet. Don't get me wrong, I'm no grinch and I usually love this time of year. I look forward to the excitement, the twinkly lights, cozy nights by the fire and time spent with my loved ones. However, this year I lost someone very dear to me and the family and without my grandad around this Christmas it just doesn't feel right. I miss him dearly and I suppose I took it for granted that he would always be with us. Celebrating Christmas this year will be difficult without him, he was the life and soul of our family and I hope he would know how much he would be missed. He will very much be in my thoughts during this time.

Finding it hard without him is another reason I am struggling at the moment and makes me sad on those dark days. I have had a few flare ups especially in my knee which is making things difficult and ive suffered with tonsilitis a couple of times so generally I have been feeling quite rotten and run down. I have done my best to carry on and fight it, hoping that my bad days have fallen pre Christmas this year so I can enjoy time with my family. But on those bad days, where it is hard to do anything but lie in bed and try to wait it out, it becomes difficult to see the good in anything. Your mind wanders from feeling hard done by to questioning your very existence and feeling you haven't achieved anything in life. The mental battle with RA is often as tough as the physical. I have been questioning myself this week because of the lack of activity I have been doing, when you can't do anything it's hard to do anything else but think... And overthink. Some thoughts that came to my head this week were 'what have I actually achieved in life? I'm 29 and because of having to take time out of work I haven't got anywhere in my career, I haven't the income to plan for the future or own a home, I am a burden to my family and friends sometimes, I let people down...' Blah blah. These negative thoughts start to dissipate or morph into more positive actions when I start to feel a little better. Rather than thinking of my career for instance in a negative way I will start to see the achievements I've made to continue working through this, the fact I ran my own business for a while etc. when you are down its often hard to see the silver lining, no matter what encouragement or support you get. It's only when you truly believe in yourself that things start to seem a little brighter. This Christmas I aim to shut out those dark thoughts as much as possible and concentrate on the things I can be so thankful for. Whilst I am deeply saddened by loss this year, I can be thankful for the good times I had and appreciate many people are not so fortunate. When things seem so bad you cannot escape I have learned to take some time, be patient, get some rest and tomorrow will be that little bit brighter and better. I wish you all a healthy and happy Christmas and hope you get to spend time with your loved ones and celebrate all the good things in your life.

Wednesday, 11 November 2015

The black hole that appeared around me a few weeks ago just seems to be getting bigger. In my previous post I explained that after much deliberation I felt it time I had to take a step back from working full time and reduce my hours which has actually been accepted now by my employers, however the rigmarole around this seems to be never ending an a ridiculous bunch of policies, procedures and politics. It took nearly two weeks for my request of hours to be dropped due to my struggle with my condition and that is subject to a review from occupational health.

No that sounds pretty simple right? Wrong. My occupational health review has been confirmed to take place in December. It's only 2nd week of November. I was told that I can only return to work prior to the occupational health review under my existing full time hours contract. My doctors have agreed that I have pushed myself too far and agree that I should only be doing part time right now and I have to agree that I don't think I'm capable of doing full time hours. I feel I'm being pushed into a corner to be honest. To top it off today I received a call stating that because I previously had time off sick this year (following my shoulder replacement I had time off to recover post surgery) I have reached my limit of sick pay for this year and will not be paid for the time off I have had recently. Again, I'm backed into a corner as I now feel I have to return to work for financial reasons rather than actually being ready. I am unsure what to do at the moment, I feel very isolated and my choices are limited. If I remain off work I won't be paid. If I go back I'm not sure how well

I'll cope. I also feel that they haven't fully supported my request for fewer hours but have had to accept due to legal ramifications rather than concern for my health and I now worry about the attitude towards me when I do return to work. It's actually made me very stressed out, at a time where I have been signed off by a doctor anyway and should be resting and I'm receiving calls and emails from work almost daily to update me on my fate. I just have a gut feeling this isn't right. I was then told today, after the call informing me I wasn't being paid for time off, that occupational health will now agree to me returning to work on part time hours until my review only if a doctor states that I am fit to work with these conditions. That has just emphasised the pressure to go back to ensure I have some money coming in but who knows what they will say at this review? Are they trying to get rid of me? I'm starting to fear that I am more of a hindrance than a help and I'm sure that's not right. These feelings are subjective and it could easily be denied that it was my employers intention to cause any stress or worry at a time of ill health. Cherry on the cake is the stress over the past couple of days has triggered yet more illness. I developed a really sore throat and a visit to my GP (again... I swear I should be paying rent there) today confirmed its tonsillitis. I just thought it would be easier than this, that I would be fully supported and encouraged to come back when I am fit and ready and be welcomed by my colleagues in doing so. I don't feel welcomed whatsoever, more like forced back into a team that is only following the rules rather than actually valuing me as an employee. I have worked very hard all my life, been a valued member of every team and I could not feel more worthless at this point. I'm fed up. Sick and tired of being sick and tired more to the point. I always try and be positive in my approach to things but there are some days where I just feel enough is enough and want to hide away until things get better. The best thing about today? A cool strawberry milkshake to soothe my throat which my sister bought me. Life isn't all that bad.

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)